Hi Joyfulcvs. Sorry you have Myositis. The twitching is part of the recovery process. I had it as the Meds began to kick in and reduce the inflammation. Nearly three years on I just get it very occasionly in my hands. So many things change and get better with time and the Meds. It is time and patience but most of us get there in the end. Best wishes. Autumm

Hi Joyfulcvs, Welcome! We have a very nice supportive DM/PM group. I am in my fourth year with DM and limited Scleroderma. You will find as time progresses then you will understand more about the course of your particular DM. Everyone is different.

No one here is a doctor. The source of the muscle twitching must be solved by the neurologist. Many people do have a twitch at the beginning of DM and some do not twitch. I was checked for Myasthenia Gravis which is a common DM overlap. Myasthenia Gravis can have muscle twitching and a symptom called eye drop. My twitching simply went away over time. Do tell the neurologist about the twitching so s/he can rule out or determine the cause of the twitch. It may also take some time for the twitch cause and diagnosis to unfold if it continues so be patient too.

DM will often have an overlapping condition. In my case, I have DM with Limited Scleroderma. I have a video that will help you understand autoimmune diseases. The video is one hour long so make popcorn. Dr. Tamiko Katsumoto MD discusses Sjogren's, DM/PM, Interstitial Lung, RA, Lupus, Scleroderma, Thyroid Disease, the requirements for diagnosis, autoantibodies, and medications for each disease. I know that you will find this helpful and it will answer a lot of questions. You can also pull this video up by title on google if it does not come up here:

Overlapping Conditions in Systemic Sclerosis - You Tube www.youtube.com/watch?v=3NFlz6U7zBY

It is very hard to sleep at the beginning of DM even without the twitch. If you are taking high doses of Prednisone, then sleep is difficult. You will also need to eat a lot of leafy green veggies and watch your blood sugars. High doses of Prednisone will cause high blood sugars. Avoid breads, corn, potatoes, rice, spaghetti, donuts, starches. Talk to the rheumatologist about your sleep issues too. I just learned to tough out my sleeping issues, but the rheumy would know what would offer for appropriate relief too.

I hope this helps. Best Wishes.

Hi, joyfulcvs, and welcome to this forum of nice people. I was diagnosed with PM in 2008, and then with overlapping DM and Lupus in 2010/2011. Before my PM diagnosis, I had lots of muscle twitching that grew worse whenever I tried to sleep at night. It got so bad that my legs began to flail uncontrollably. A few doctors told me to take Vitamin D3, calcium, and magnesium. The one recommended a high dosage of vitamin d3. The vitamin d3 helped tremendously, and I only was left with occasional eye twitching, etc. More recently I have begun to take powdered magnesium citrate on a more regular basis, which has helped my muscles feel even more calm. You might want to ask your doctors to check your vitamin d level, as many of us with myositis were vitamin d deficient. Two doctors told me that there's no truly accurate test to measure magnesium levels, and the one said that about 80% of people in the U.S. are magnesium deficient. So he suggested that I take about 400 mg. per day (but not magnesium oxide). Hope you find what will work for you. Best wishes.

I TOO HAD MUSCLE TWITCHING DURING THE HEALING PROCESS. I ALSO HAD IT WHEN I "OVER STRETCHED" MY MUSCLES BUT IT WENT AWAY IN A FEW DAYS ON ITS OWN :)

Hello joyfulcvs, I am blessed that I only have PM. I have twitches off and on the entire time and they don't normally cause me to not be able to sleep. They are very annoying. I wish I could use a muscle relaxer but since I take pain medication I can't take a relaxer. Most of my twitching is in my legs and toes. I have lived with the twitching ever since I was diagnosed in 2011. It isn't as bad as many other things have been so I deal with it and go on with life as best as possible. We are a really good group. We support each other and offer prayers and whatever advice each may need. I hope that this helps.